10 Things People With Crohn’s Disease And Ulcerative Colitis Want You To Know

Millions of people in the US are affected by inflammatory bowel disease (IBD), including Crohn’s disease and ulcerative colitis. Here's what members of the Crohn’s & Colitis Foundation's community had to say about living with IBD.

1. Everyone's disease affects them differently.

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Living with IBD is a very personal experience. No one has the exact same symptoms or disease journey. That’s why it’s important to work with your healthcare team to identify your treatment goals and figure out the best plan for you. 

2. Eating or not eating certain foods won't fix it.

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What you eat cannot cause or cure Crohn’s disease or ulcerative colitis. However, there are certain foods that can make IBD symptoms worse. Learn more about diet and IBD here.

3. Just because you can’t see it doesn’t mean it’s not there.

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Like with many other chronic illnesses, it may not be easy to tell if someone has IBD just by looking at them. It's important to remember that someone feeling unwell might not look sick at all.

4. Not even surgery is a cure for IBD.

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Although surgery can help improve quality of life, it is not a cure for IBD. Learn more about surgery for Crohn’s disease and ulcerative colitis.

5. The psychological toll can be as real and painful as the physical toll.

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Rates of anxiety and depression are higher among patients with Crohn's disease and ulcerative colitis, compared to patients with other diseases and the general population. You can learn more about mental health and IBD here. 

6. Every day is different. You learn to adapt and get stronger.

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Dealing with painful and exhausting symptoms daily comes with a learning curve. Many IBD patients learn how to cope in the years following their diagnosis.

7. It shouldn’t be taboo to talk about a chronic illness.

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IBD symptoms may involve taboo topics, like needing to use the bathroom frequently. Some people with Crohn’s disease or ulcerative colitis want to destigmatize IBD by talking about how it impacts them. It’s important to connect with others who understand what you’re going through.

8. You might hurt every day but still decide to live your best life.

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Learning to manage symptoms is essential for continuing to live a fulfilling life. See more about pain and IBD here. 

9. There are many more symptoms beyond 💩 issues. You might be in a constant battle with your body.

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Although many patients experience diarrhea, urgency, and constipation, IBD causes several symptoms that are not bathroom-related, including debilitating pain, weight loss, fever, and fatigue. Learn more about IBD symptoms here.

10. Being in remission does not mean you are cured.

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Achieving remission (no signs of active disease) is the goal of treatment for Crohn’s disease and ulcerative colitis. Unfortunately, there are no cures yet for these diseases but important research is being done to continue aiding those who have IBD. 

The Crohn’s & Colitis Foundation funds research to help find new treatments and cures for these debilitating diseases. Learn more from the Crohn's & Colitis Foundation.

This post is supported, in part, by sponsorships from AbbVie; Amgen Inc.; Bristol Myers Squibb; Daiichi Sankyo Company, Limited; Eli Lilly and Company; Ferring Pharmaceuticals; Janssen Pharmaceuticals; and Takeda Pharmaceuticals U.S.A., Inc.